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Ten Steps to Living (a GOOD) Life in Between Doctor Appointments

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Are you a parent with a sick child, a child with a sick parent, or a spouse with a sick partner? Chances are that you felt like you were drowning when the tidal wave of information and responsibilities of being a caregiver flooded your life. In the blink of an eye your world changed, tables might have turned, and now you are in the driver’s seat going 150 mph down a dark road with no headlights – or at least so it feels!Caring for a loved one with medical conditions is taxing and overwhelming. They don’t teach those skills in school or college. LIFE seems to be the only place where you get your crash course and failing is NOT an option!

I have over the past 6 years gone from full on panic mode and all consuming medical issues, to an eerie calm of routine appointments and a few “we don’t need to see him again, unless things change!” This switch in dynamics is more than what we hoped for just a few short years ago. It’s a wonderful feeling, but at the same time it leaves you wondering if there is still one other shoe dangling, hanging off the big toe – threatening to DROP at the slightest gust of wind.

Shoes drop all the time. Shoes come crashing to the ground on a daily basis. Some times they fall and cause a big commotion. Other times it was expected and almost a relief when it happens. There is no limit to the number of shoes that can drop in someone’s lifetime. Unfortunately when you have a loved one with medical concerns a forecast of “scattered shoes throughout” is probably “best case scenario” for most of us. With that being said, we have to strike a balance and somehow find a way to live in between these shoe drops.

Here are the ten steps I have followed for the past 6 years – and over time I found true happiness and peace. I hope you will too!

Go to appointment: If at all possible, come prepared! Write down all your questions and concerns. Sometimes we are caught off guard by getting a diagnosis when we thought everything was fine. In this case, an open ended question like “what have other families in our situation asked at this point?” or “if you were just handed this information about your loved one, what would you like to know?” Write everything down – start a note book at the appointment or as soon as you get home. Write down words you don’t know or understand. Medications, tests and things you have to do or they are promising to do – so you can follow up in a timely fashion. Advocating for your loved one has just become your # 1 “job.”

Fully feel emotions:Personally I give myself 24 hours to digest new medical information. I spend a day being sad, mad, frustrated, elated, relieved, happy – whatever feelings emerge I feel them fully… and then I go back into “this is not going to define us” mode. But for me, the day spent being sad, grieving, wondering, worrying, celebrating, jumping, or eating is so important for my personal healing.

Live life: Adjust to a “new normal” and then move onward and forward – living life. The hardest part (for me) about medical concerns is that the entire world does NOT come to a screeching halt when your world is crashing down around you. People STILL get up, go to work and live their ordinary lives – while you are digging yourself out of the rubble – or so it feels. Personally, I try to “adjust to the new normal” as quickly as possible – so we can go back to enjoying each other – after making any necessary adjustments or accommodations.

Document changes: While we are enjoying everyday life, I document any changes in his behavior and habits (eat, sleep, energy) in my trusty notebook. Make a habit of writing down changes that are important for your loved one’s particular medical condition. I once brought a spreadsheet to the pediatrician showing our three (at the time) boys’ colds and coughs over the past two months – detailed with snot color and amount of phlegm. It was one of my proudest medical mom moments! (And the pediatrician loved it!)

Research: OK, I hesitate to make this one of the ten steps, but we all do it, so it should be included. However, for the love of God – stay off Google. Search engines are NOT your friend when you are “researching” medical conditions. Great example: during my last pregnancy I diagnosed myself with “dry itchy scalp due to pregnancy hormones.” I was wrong – it was LICE! You can google ANYTHING and get the diagnosis you were suspecting. I will however, encourage you to reach out to any foundations or non-profit organizations set up for a specific medical condition. They are on the forefront of research developments and they are often a wonderful place to turn for correct, up to date and well documented information.

Find support:So now that you are a full fledge caregiver, do not under-estimate your own need for support, emotional outlets and friends. Personally, I did not have a support group or other medical friends to lean on when our son was the sickest. I wanted support – I needed friends… so I made my own support group on Facebook. I built a network of kindred hearts – moms who “got me” and traveled on similar journeys. I also found help and support from the non-profit organization for our son’s specific condition – these families from all over the world have become like a second family over the past 5 years. So fret not – if you don’t have a network – build it! You will need it – and others need you!

Meet with appropriate specialists: Prior to your next appointment with your primary physician make sure to see any specialists you were referred to. You will want to have all the results available for your doctor to review, so depending on the type of testing necessary, start scheduling the specialist appointments a month or two before you need the results. The really good specialists can easily be scheduling new patients several months out in the future.

Order copies of reports:A week after your appointment with any specialist, call and ask to have a copy of the appointment notes as well as any test results sent to you. If at all possible, ask to see the complete test results, not just the reviewing physician’s final synopsis. Read them as soon as they arrive, make notes to ensure that the final results are the same ones conveyed to you at your appointment. Write any questions or comments in your note book – and then file all the paperwork – and put it out of your mind for a while.

Review and prepare: Few days before seeing your primary doctor gather all the past reports, test results and your note book. Refresh your memory from the last appointment. Look at your notes of what you discussed, memorize numbers and test results and review your observations since last appointment. Make new notes in your book of questions to ask and concerns to discuss. Yes – it is much like preparing for an exam… You have become a student of this medical condition.

Stay calm & go to the appointment:The shock from the initial diagnosis has now settled, it has become a part of your life and you have adjusted to your “new normal.” You will see your primary physician on a regular basis, whether it is every month, three months, six months… or perhaps even every year – this doctor will be a permanent part of your life. If you followed the steps outlined above, you will be well-prepared for these appointments, and in a great position to discuss your concerns and have your questions answered.

After the appointment repeat steps 2 through 10…

Over time, the cycle of living in between appointments will become second nature. Initially it seems impossible, but there are smiles to be found, hugs to be shared, tenderness to be given and HOPE! My best advice to anyone on a medical journey for themselves or a loved one – seek support! You are never alone in this – find kindred hearts – they are out there, waiting to support and be supported.

Stay strong, never lose hope – and tie your shoes so they don’t drop!

Where have you found your support network? Was it there all along, or did it come in time?

Thank you for this post. As a mother to a child living with a severe congenital heart defect (“HLHS”), and President of a nonprofit for families diagnosed with HLHS, this is extremely on point and useful information! Will be sharing with all of our “HLHS” families.

[…] Thank you for waking me up! You reared your ugly head and made my life so miserable that I was forced to make drastic changes. Wrangling this dragon for the past 10 years has taught me countless things about myself, life and managing a chronic medical condition. […]

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